This blog is dedicated to my little girl, Sheena Tara - a gorgeous little girl born in January 2006. Sheena has Down Syndrome and had some major health problems in her first 18 months of life, the most significant being West Syndrome or Infantile Spasms. She's now recovered from that, and well and truly making up for lost time. Welcome to Sheena Time!

Monday, December 18, 2006

Catch Up - Sheena's Scare

Sheena has had an eventful week, but I haven't posted any updates because our ISP has been messing us around.

Last Tuesday, before the mother's group Christmas Party, Sheena looked to have a cluster of spasms. It felt like we were back to square one. I rang the neurologists to request an urgent EEG. Thinking that they would be fully booked until after Christmas, I was ready to go into battle for Sheena, but they got us in the following day. I somehow managed to stubbornly pull myself together to go the Christmas Party, because I think normality helps. Besides, I had already made the strawberries dipped in chocolate, and bought the champaign.

So the next day, Nan, Sheena and I head off to the Childrens for another EEG. The whole thing was very nerve-racking for us, and for Sheena, quite distressing. She hates having the things stuck to her head, and screams so much, that once it is finished she goes into an exhausted sleep (exactly how they want her for the test). We could immediately tell that the EEG looked fine. We now know what a really bad EEG looks like vs an organised one. The technician who does it is great. For one thing, she is really fast at sticking all the stuff to Sheena's head, and she provides a lot of information about epilepsy in general. She said that some people have a bad taste in their mouth before a seizure, which is their 'aura' which could explain why Sheena was obsessed with her mouth for a while there (but not teething). She also said that even if people are on anti-convulsants they can still have an aura, but not a seizure.

We had to wait for one of the neuro's to check the EEG, and Monique said that it looked 'very good'. Sheena has never even had a 'good' EEG - she has had an 'improved', so we were delighted that it was 'very good'. We all agreed that her cluster of spasms, were most likely just little jolts as she was going to sleep. Of course, with Sheena's history little jumps are pretty scary for us to watch.

Nan and I celebrated with a lemon slice and a coffee at the hospital cafe.